God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

(2 Corinthians 1:3b-4, NLT)

Thursday, May 21, 2009

Wednesday, May 20We finally got home Monday night. We flew out of Boston the morning of the 13th, the day Faith turned 6 months old. Dave flew home, and my mom, the boys, Faith, and I went to my brother's, before taking an unplanned side trip to introduce Faith to my grandparents and Gram in Wisconsin. Faith enjoyed meeting everyone, and Gram got Faith to laugh out loud for the first time, and a few times after that! The drive from Wisconsin to home wasn't bad, although it was long. We stopped one night in Omaha, and since we were there we decided it would be nice to take something to Emerson's mom. We were happy to meet her, and glad to be able to pay forward some of the kindness and generosity others have shown to us.Now we're working on getting into a routine and getting used to being at home for really the first time, other than that one short weekend before heading to Boston. Faith's already had her first appointment with our family doctor, and continues to grow well. She's up to about 13 1/2 lbs now, which means she has gained 4 1/2 lbs in less than 2 months. She's starting to have chubby baby cheeks and looks really good.She'll have her first appointment with Dr. Soden next Tuesday. I'm trying to be optimistic about how that will go... I'm planning on taking her by the NICU to show her to all of her nurses after our appointment, and I'm hoping maybe we'll see Dr. Sandoval too, so I can show him that Omegaven works! I'll probably take a meal in to leave in the kitchen in the NICU, since I remember how nice it was not to have to worry about what to eat while Faith was there. I can't wait for everyone to see how much better she is, she's like a different baby!I hope to be able to post some more updates soon, to tell more about the last month and everything we did in Boston, and post some pictures!

Friday, May 1, 2009

I think many of you who read our blog also probably read about Emerson White. If you don't, she recently had her second multi-visceral transplant (5 organs) and is having some serious post-transplant difficulties. She is only a few months younger than Noah... Please keep Emerson and her family in your prayers this weekend!! Pray that God will bring healing to her little body, and continue to give strength to her incredibly strong mother and the rest of her family!

Check out this contest at Cloth Diaper Tips to win three bamboo all-in-one cloth diapers. But don't enter unless you're going to share with me! ;)I can't wait until I know for sure Faith's c-diff is gone (I'm pretty sure it is, but they won't re-test until her course of vanco is done) so I can get her back in cloth! Her butt can't wait either, I had to switch to "natural" disposable diapers because she's breaking out in a hive-like rash :( Noah had the same thing with disposables, which is what led me to cloth in the first place.Dave will be here tonight, and I really will come back and post some more!

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Welcome to Faith's Place!

This is Faith's Place. Faith is a gorgeous little girl who had a long recovery from being born with a serious birth defect called gastroschisis (she had a hole in her abdominal wall and her intestines were on the outside at birth). Her intestines suffered some damage, most likely from being exposed to the amniotic fluid before she was born, and didn't work like they should; she was diagnosed with functional short bowel syndrome at about 4 months old.

Faith was born November 13, 2008, and spent her first 127 days in the NICU at Denver Children's Hospital. Because her intestines were not functioning, she was not able to receive nutrition in the normal way through her stomach and intestines, so she was on IV nutrition (TPN and Intralipids) during this time.

As a result of being on TPN for such a long time, she suffered liver damage to the extent that her doctors in Denver believed she should be evaluated and listed for a small bowel transplant. However, with a survival rate of only 50% at 5 years post-transplant, we weren't ready to take that step. Instead, we did considerable research on our own, and found out about an experimental treatment for babies with TPN-associated liver disease (TPNALD) called Omegaven, which was run by Children's Hospital Boston.

On March 24, 2009, Faith was admitted to Children's Hospital Boston, and became Omegaven baby #115. After only 30 days on Omegaven, Faith's direct bilirubin level (an indicator of liver health) had already dropped from 6.7 to 2.0, including an expected spike to 8.0 about 2 weeks after starting Omegaven treatment. Less than 6 months after starting Omegaven, she was fed 100% through her stomach (enterally), getting large amounts periodically during the day (bolus) and continuous feeds over night, and her liver function test results were *perfect*.

Her central line (a permanent IV line in her leg through which she received her TPN) was removed on September 16, 2009, after almost exactly 10 months to the day of having a central line, without ever having a line infection!

She learned to eat and drink by mouth, and by 18 months old, she was 100% orally fed! Her g-tube was removed in December of 2010, making her officially tube-free for the first time in her life. She is now enjoying life as a "normal" preschooler, with very little medical follow-up, and other than her scars, no outward signs of any of her journey to this point.

If you are new to Faith's blog, click on "2008" in the archive list, scroll to the bottom of the page, and work your way up to read her story from the beginning!

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Statistics to consider...

-The survival rate of children with direct bilirubin levels greater than 3.0 for 3+ months is only 22%. (Faith's direct bilirubin levels were greater than 3.0 for about 4 months.)-The survival rate of children on TPN for longer than 1 year is only 10%.-The survival rate of children who receive a small bowel transplant at 5 years post-transplant is only 50%.-The survival rate of children, with a history of TPN-associated liver disease and direct bilirubin levels of at least 2.0, on TPN, with Omegaven replacing Intralipids, is 98%!!!!!!

Education is the key to saving the lives of children with TPN-associated liver disease. The sooner these children receive Omegaven, the better their chances are of a "full" recovery (any damage that is done stays done, Omegaven does not reverse scarring in the liver).Healthcare professionals who know about Omegaven and neglect to tell their patients it is an option, in my opinion, are failing to uphold their responsibility to do whatever it takes for their patients' health and well-being.If your child is suffering from TPN-associated liver disease and you have found out about Omegaven and its benefits on your own, and your doctors are giving you the run-around when you bring it up to them, it's time to change doctors!! (believe me, I've been there) Omegaven WORKS, as long as it is not started too late!